(We have details on the single care record proposal and how to use your opt outs)
Every use of data should be consensual, safe, and transparent. In matters of health and care, your relationship with your doctor is based on a very human spirit of confidentiality. Not the cold law of data protection.
The single care record will be a government/politician controlled database of every interaction you have with the health service, and all the text notes your doctor has ever typed; why you are taking anti-depressants, why you need sleeping pills, STD treatments or prevention drugs, and why you were being given them. All will be centrally stored, available to staff wherever you see the NHS logo, from any A&E in the country to any GP, hospital, Pharmacy, or private health provider able to read all of it. You’ll have no way to know who has read the things you told your doctor at your most vulnerable time in your life. These notes last for your lifetime. How existing opt outs will translate, and whether the national data opt out will apply when the Government sells the database is also currently unknown.
Any large, formal system is bound to breach the Hippocratic Oath; “First, do no harm”. Data doesn’t care. In a purely digital world, a thing either is or it isn’t – with no nuance. Smaller systems, talking to each other, offer more discretion for the humanity of your situation.
Patients routinely find themselves in one of the following three real-world scenarios. Human situations get ignored by the database designers’ visions, forgetting the real world:
- When a doctor cannot tell their patient the full story without causing distress – such as when at test returns a likely false positive result.
- When a doctor cannot tell another doctor something – such as where they’ve been asked not to by their patient.
- When institutions cannot tell doctors relevant details – e.g. in situations where there is “too much data, but no clear information”.
When you are between diagnosis and treatment, which (if any) of these three apply may change hour-to-hour. Human choices are a reality, usually ignored by by those who want to copy records across a lifetime.
medConfidential defends the confidentiality you desire for your medical records.
Why is Confidentiality more than Data Protection?
“Data Protection” was a 1980s response to the advent of new computers and the copying of data. Transparency was the balance intended to ensure that processing is “fair”. When copying was limited to “faster photocopiers”, organisational boundaries were maintained, and confidentiality questions rarely engaged.
Modern communications has created the capacity to copy medical records at a scale that shatters confidentiality.
Confidentiality, and trustworthiness, is based on patients’ expectations of boundaries. And so, as data subjects, any processing that breaches duties of confidence cannot be considered Fair – so cannot be lawful.
medConfidential defends the confidentiality you desire for your medical records.
If you do have concerns, it is still safest to opt out now to exclude your data. You can always opt in later. For more information on what you can do, please visit our How to opt out page.
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